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It is with a heavy heart that we tell you all that our dear staff member Tonibunny, who was with SSo from the start and was a good friend to many here, passed away Thursday night.

She was a wonderful friend to many members of the site. She readily shared all her knowledge and experience of scoliosis and was always willing to help and encourage anyone who reached out to her. When she wasn't sharing her experience of scoliosis, she shared her love of books, art, and music. She had a love of learning and life that was infectious.

Maddy's Stryker Frame Experience

Maddy had a growth rod fitted in November 2007 when she was 7 years old. This controlled her curve adequately for 3 years but during the last year her curve worsened, her rib hump became extremely pronounced and her rod broke under the strain of her curve which had become rigid. The only way of achieving a satisfactory correction was for Maddy to undergo Anterior Release surgery (where flexibility is restored to the spine by removing the discs between the vertebrae within the curve) and to spend two weeks in traction on a Stryker Frame before Spinal Fusion surgery.

On 11th May Maddy underwent her Anterior Release surgery. Because of the size of her rib hump she also had an Internal Costoplasty which involves breaking some of the ribs to enable a cosmetically better outcome in the final surgery. When Maddy came round in the Recovery Room she found it hard to breathe and she had to have an emergency xray to see what the cause was. It was the location of the chest drain which was wrong so this had to be moved around to find the right place to effectively drain the fluid. This was painful, as was the xray as the plate had to be forcibly pushed under her back.

She slept on and off for the next 12 hours on her back, after which it was time for her first turn on the Stryker Frame. I had been told that the first turn is always the worst and it was. She was clamped in between the two mattresses screaming and when she emerged the other way up she was in agony for a good hour afterwards. One of the nurses checked her back and I was surprised at how the rib hump still looked huge and covered in bloodied dressings. I was under the impression that her back would look different after the first surgery and I was a bit worried that it didn’t. Particularly as Maddy doesn’t sleep on her back because of the hump, yet on the Stryker Frame she would have no choice but to lie on her back for half the time.

This is the Stryker Frame:

The patient wears a halo which is attached to the head with four screws – two at the front and two at the back. On two occasions the screws had to be tightened but this was not painful at all. There are also stirrup-like things which are attached at the knees with pins. The pins hurt sometimes after turning when her legs moved too close together and they had to be gently moved apart. When she came out of surgery there were about 3lb of weights at each end. Most days 1lb would be added to each end and the frame had to be turned every 2-3 hours to stop pressure sores. When she was face up the only thing she could do was listen to audio books as she couldn’t see the television, but when she was face down she could read and make things and there was a mirror that people could look into to have a conversation with her.

Being turned:

Two days after the surgery Mr Tucker came and said that the surgery had been straightforward. As an xray taken earlier that day showed a small pleural effusion he asked for the chest drain to be put on suction and then removed the following day. The blessed thing was bubbling all night, so I lay back and tried to imagine I was in a spa! The next day the chest drain did come out, after which Maddy began to feel much better. She even let one of the nurses decorate her halo.

A couple of days later we were in a routine of physiotherapy for half an hour in the morning, followed by an hour of school (one of the Hospital School teachers came and did a project with Maddy while she was facing down), followed by lunch (eaten face down) and then craft activities for an hour with the Play Specialist.

Maddy playing with the ipad:

Eating was difficult. Not only was she not very hungry due to surgery, but when she did have an appetite she would eat and feel full very quickly. You can eat on your back but she didn’t like to because she felt like she was going to choke.We did have a couple of instances of vomiting, once face down and once face up. The latter I was dreading but it was fine, the nurse helped with suction and she didn’t choke although it was very messy!

It was only during the last four days of traction that it seemed any progress was made regarding Maddy’s curve straightening out and on the last two days they added 2lb to each end instead of 1lb. By the time she was wheeled into the second surgery she had 20lb on each end! I could hardly lift them! She didn’t notice weights being added. It just goes to show what you can achieve if you take it slowly. Saying that though she did suffer pain every day she was on the frame. It wasn’t very much pain and was usually in her rib hump towards the time when she should be turned. The turning was a bit hit and miss depending on who was on duty. She was occasionally left for over 4 hours but it was usually between 2-3 hours. Her knees used to get red and sore when she was on her front but they put soft padding on them to help with that.

Thirteen days after the first surgery Maddy went down for her Spinal Fusion. This involved a further costoplasty and an awesome correction. She was discharged a week later. The only difference her time on the Stryker Frame has made to her recovery is that her knees are very weak, having been pinned in one position for so long. She has lost an awful lot of weight and has gained 11.2cm in height, so she looks very tall and frail but with the posture of a ballerina!

Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

Re: Maddy's Stryker Frame Experience

I think it would be a good idea to Sticky this, if you wouldn't mind Rachie? It would be very useful for any parents whose children are facing the same treatment.

[SIZE="1"]37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.[/SIZE]

Re: Maddy's Stryker Frame Experience

That's fine. I'm happy for you to do that.

Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

Re: Maddy's Stryker Frame Experience

Rachie, all I can say is WOW. I just can't imagine what it would feel like to be stuck in that frame, but it sounds like Maddy is a true super star - not many kids would be able to deal with that the way she did. You should be so proud of her, and yourself - what a huge thing for a little girl to go through.

Your write-up of the experience was excellent and I know it will really help other parents of kids facing this surgery. Maddy herself could even read it one day!

I hope everything is now settling into place for Maddy and all the family, and hope her recovery is as uneventful as possible

I'm Sally, 31, and I have congenital kyphoscoliosis in association with Spina Bifida, Diastematomyelia and tethered cord. Surgery to detether spinal cord and remove bone spur at Addenbrooke's in 1984 aged 3. Developed 'pes cavus' and weakness in legs, various foot surgeries between '92 and '94. Decompression of spinal cord, hemivertebrectomy and fusion L2-L4 with instrumentation by Mr Crawford and Mr Laing (neurosurgeon) in 1998 aged 17. Had two stage anterior-posterior T10 to pelvis fusion surgery on 27th February 2012 at NNUH by Mr Crawford and Mr Lutchman. Fused well but now curving over top of fusion, so facing fusion extension up to T1. Trying a brace first in order to put off surgery til next year

Re: Maddy's Stryker Frame Experience

Re: Maddy's Stryker Frame Experience

Hi Rachie, what a brilliant insight into what Maddie and yourself went through. She is such a brave girl no doubt you are very proud of her. Hope everything is going well since you got home, imagine things are hectic. Hope she recovers quickly and regains some of the weight she lost, lots of mums good cooking will help no end. Best wishes to Maddie and the family Sue x

Re: Maddy's Stryker Frame Experience

oh Maddie, what a brave girl you are. This really made me cry poor Mummy as well! I am so glad that this is over and looking forward to read about your recovery.I hope you have a lovely warm welcome back at school as I am sure all your friends have really missed you and I hope you enjoy your last few weeks in year six.

Re: Maddy's Stryker Frame Experience

Hi Rachie,

Maddie is so so brave and I'm sure you must be immensely proud of her! I think you are both fantastic to get through such an experience. Your story is truly inspiring to anyone touched by scoliosis, thank you for sharing with us,

xxx

Mummy to Emilia 2 years 8 months who was diagnosed with congenital scoliosis at the age of 12 months old. Emilia is scheduled to have her 1st (and hopefully only) surgery in early June 2011

Re: Maddy's Stryker Frame Experience

WOW! Thank you Maddie and Rachie for sharing you amazing story you are an inspiration for so many patients and families. Well done and congratulations and hope you have a speedy recovery Maddie God bless you XXX!